the psych lobby strikes again: DSM-5 v. WHO's ICD in the US

At Suzy's suggestion, Cort added the COalition 4 ME/CFS response to the DSM-5 into this thread as well as the coalition call to action here.

I think the link to the response that the Coalition submitted might have been lost in the process - at least from what I can tell. Here's a high level summary and links to both the coalition position paper and the coalition response.

1. High level summary of the issues

Among other changes, the DSM-5 proposal includes the establishment of a new category called Complex Somatic Symptom Disorder (CSSD). The criteria for a CSSD diagnosis include somatic symptoms that last more than 6 months and significantly disrupt life combined with the doctors assessment that the patient has a disproportionate concern about the medical seriousness of his symptoms. The guidelines also include recommendations of Cognitive Behavior Therapy (CBT) and antidepressants as the appropriate therapies.

CSSD could prove disastrous for the ME/CFS patient and for patients with other diseases like Fibromyalgia, Gulf War Illness and IBS that are misunderstood, misdiagnosed and mistreated by the medical community at large. For doctors who view the ME/CFS patient as just depressed, it will be a small leap to decide that the patient has disproportionate and persistent concerns about the medical seriousness of one's symptoms and, as a result, inappropriately diagnose CSSD. Once diagnosed with CSSD, the implications for diagnosis, treatment, disability and insurance will be profound. ​

2. The DSM-5 position paper with further details on the issue and the process to submit comments. This is based on the DSM-5 proposal as it exists this year (May, 2011)

As Suzy said, each person or organization needs to submit their own comments on the web site using this process. You can either use the above materials to compose your own letter or use the letter directly.

"We are extending the period for submitting comments and suggestions to the web site regarding the proposed diagnostic criteria revisions, and the newly proposed organizational structure for DSM-5. We are appreciative of the ongoing interest in contributing to this process and are extending the period for submittng comments until July 15th. This extension will also permit reviews and comments for the newly proposed criteria and approach for the assessment of Personality Disorders, which are now being uploaded to the website for release. Our thanks to those who have already provided contributions to this interactive process."

Well, there you go...

So, those of you who did not submit now have another 4 weeks in which to submit a response. I want to see thousands telling the APA why they need to rip up these proposals and start again.

All stakeholders are permitted to submit comment and the views of patients, carers, families and advocates are important. But evidence-based submissions from the perspective of informed medical professionals clinicians, psychiatrists, researchers, allied health professionals, lawyers and other professional end users are likely to have more influence. All national and regional patient organizations need to submit comment.

If you are a patient organization, professional, patient, carer or advocate and have already submitted and would like a copy of your comment added to my site, please send a copy to me.agenda@virgin.net

"Clients with CSSD are typically over-utilisers of primary care services.
The referring general practitioner will often express relief in the
psychologist receiving the referral. These clients tend to hold strong
beliefs about their illness, think catastrophically about their health,
adopt a sick role and often present with anxiety and/or depression
(Woolfolk & Allen, 2007). CSSD is commonly encountered in both primary and
secondary care but despite its high incidence, the lack of appropriate care
leads to increased hospital admissions and investigations. These
investigations are often to the patient's detriment and they tend to double
the cost to the health services compared to those without CSSD. Currently,
psychiatric services tend to concentrate on "serious mental illness" or
psychotic disorders, despite the large number of people suffering from
somatoform disorders (Jorsh, 2006). Patients with CSSD run the risk of
being overlooked by clinicians as they are neither medically "sick" nor do
they have a "serious mental illness". Therefore, it is important to
identify the issues in dealing with CSSD and create a clear plan for the
sake of the patient, clinician, and cost to the health services."

"Clients with CSSD are typically over-utilisers of primary care services.
The referring general practitioner will often express relief in the
psychologist receiving the referral. These clients tend to hold strong
beliefs about their illness, think catastrophically about their health,
adopt a sick role and often present with anxiety and/or depression
(Woolfolk & Allen, 2007). CSSD is commonly encountered in both primary and
secondary care but despite its high incidence, the lack of appropriate care
leads to increased hospital admissions and investigations. These
investigations are often to the patient's detriment and they tend to double
the cost to the health services compared to those without CSSD. Currently,
psychiatric services tend to concentrate on "serious mental illness" or
psychotic disorders, despite the large number of people suffering from
somatoform disorders (Jorsh, 2006). Patients with CSSD run the risk of
being overlooked by clinicians as they are neither medically "sick" nor do
they have a "serious mental illness". Therefore, it is important to
identify the issues in dealing with CSSD and create a clear plan for the
sake of the patient, clinician, and cost to the health services."

"Patients with CSSD run the risk of
being overlooked by clinicians as they are neither medically "sick" nor do
they have a "serious mental illness". Therefore, it is important to
identify the issues in dealing with CSSD and create a clear plan for the
sake of the patient, clinician, and cost to the health services."

What warped mind can come up with an idea like this? It's got to be someone who has a stake in the last few words (in bold).
The fact that people can even come up with an idea like this is idiotic but that others are thinking about approving this is inhumane!

"It seems that Americans are in the midst of a raging epidemic of mental illness, at least as judged by the increase in the numbers treated for it. The tally of those who are so disabled by mental disorders that they qualify for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) increased nearly two and a half times between 1987 and 2007-from one in 184 Americans to one in seventy-six. For children, the rise is even more startling-a thirty-five-fold increase in the same two decades. Mental illness is now the leading cause of disability in children, well ahead of physical disabilities like cerebral palsy or Down syndrome, for which the federal programs were created.

"A large survey of randomly selected adults, sponsored by the National Institute of Mental Health (NIMH) and conducted between 2001 and 2003, found that an astonishing 46 percent met criteria established by the American Psychiatric Association (APA) for having had at least one mental illness within four broad categories at some time in their lives. The categories were "anxiety disorders," including, among other subcategories, phobias and post-traumatic stress disorder (PTSD); "mood disorders," including major depression and bipolar disorders; "impulse-control disorders," including various behavioral problems and attention-deficit/hyperactivity disorder (ADHD); and "substance use disorders," including alcohol and drug abuse. Most met criteria for more than one diagnosis. Of a subgroup affected within the previous year, a third were under treatment-up from a fifth in a similar survey ten years earlier..."

"...Not only did the DSM become the bible of psychiatry, but like the real Bible, it depended a lot on something akin to revelation. There are no citations of scientific studies to support its decisions. That is an astonishing omission, because in all medical publications, whether journal articles or textbooks, statements of fact are supposed to be supported by citations of published scientific studies. (There are four separate "sourcebooks" for the current edition of the DSM that present the rationale for some decisions, along with references, but that is not the same thing as specific references.) It may be of much interest for a group of experts to get together and offer their opinions, but unless these opinions can be buttressed by evidence, they do not warrant the extraordinary deference shown to the DSM. The DSM-III was supplanted by the DSM-III-R in 1987, the DSM-IV in 1994, and the current version, the DSM-IV-TR (text revised) in 2000, which contains 365 diagnoses..."

"...The drug industry, of course, supports other specialists and professional societies, too, but Carlat asks, "Why do psychiatrists consistently lead the pack of specialties when it comes to taking money from drug companies?" His answer: "Our diagnoses are subjective and expandable, and we have few rational reasons for choosing one treatment over another." Unlike the conditions treated in most other branches of medicine, there are no objective signs or tests for mental illness-no lab data or MRI findings-and the boundaries between normal and abnormal are often unclear. That makes it possible to expand diagnostic boundaries or even create new diagnoses, in ways that would be impossible, say, in a field like cardiology. And drug companies have every interest in inducing psychiatrists to do just that..."

***********************************************************

The closing date for comments in the second DSM-5 public review has been extended to July 15.

"Children on Medicaid under the age of three would not be prescribed powerful anti-psychotic drugs without a special authorization, under new rules the state Health and Human Services Commission (HHSC) implemented last week.

In response to widespread concerns about the number of impoverished Texas kids being prescribed drugs like Seroquel and Risperdal medications that can have serious side effects in children prescribing doctors would have to get a prior authorization from the state, a steep hurdle designed to limit use of the drugs.

The changes to state policy, which took effect June 14, are based on evidence-based clinical criteria and nationally recognized peer-reviewed information, said Stephanie Goodman, a spokeswoman for the HHSC...

"...The goal is not to micromanage, or to delay needed treatment, Turner said at the time. But there should be at least some minimum level of authorization to check the safety and appropriateness of these drugs in children under 16."

A reminder that there are still 13 days left in which to submit letters of concern to the APA in the second public review of draft criteria​

If you haven't already submitted a letter, this year, and if you are up to it, I urge you to register and submit feedback before the closing date on July 15.

If you know an informed clinician, social worker, educator, lawyer, politician who might be persuaded to submit a response as a professional stakeholder please approach them for a submission.

If the name of your national, regional, state patient organization isn't listed below, please contact them, this week, and ask them to review the proposals and submit a response.

I am collating submissions to DSM-5 on my website. If you have already submitted and would like a copy of your submission included with the others on my site, please forward a copy to me via PM or to me.agenda@virgin.net stating how you would like to be styled. No email addresses will be published.

If you are aware of a patient org that has submitted but is not yet included in the list below, or a professional who might be prepared to release a copy of their submission for publication on my site, I'd be pleased if you could let me know.

In June, the British Psychological Society submitted a response to the DSM-5 draft proposals.

The section of their submission which specifically addressed the current proposals for "Somatic Symptoms Disorders" is published on my site on Page 4 of the collated responses for this second stakeholder review exercise, here:

Citation: J. Giordano : On The Implications Of Changing Constructs Of Pain And Addiction Disorders In The DSM-5: Language Games, Ethics, And Action. The Internet Journal of Law, Healthcare and Ethics. 2011 Volume 7 Number 1

"To be sure, the DSM-5 may offer an opportunity to better characterize pain, and in this way might fulfill the role of diagnosis in framing the disorder and determining the type and extent of care required. For example, an Axis I diagnosis of chronic pain as a presentation of CSSD, when coupled to an Axis III general medical condition (such as fibromyalgia) and Axis IV psychosocial stressors would certainly depict pain as a complex, multi-dimensional and multi-symptomatic disorder. However, while the changes proposed for DSM-5 are intended to clarify diagnosis of pain syndromes, I wonder whether the medical field and its administrative and economic infrastructures (e.g.- insurance providers, etc) are prepared for such change(s). Without a preemptive or at least concomitant shift in the current climate and conduct of pain care to recognize the profoundly interactive physiological and psychological dimensions and presentations of pain (and the pain patient), I fear that the nomenclature and descriptions used to define pain disorders in the DSM-5 might create ambiguity concerning 1) the reality of pain; 2) the need for both physiological and psychological care, 3) the type (and exigencies) of pharmacotherapeutics required, and 4) the disposition of economic resources necessary to sustain such approaches."

-------------------

Three days left before the second DSM-5 stakeholder review period closes

On June 16, the American Psychiatric Association (APA) announced an extension to its second public stakeholder review of draft proposals for categories and criteria for the next edition of the Diagnostic and Statistical Manual of Mental Disorders, which will be known as DSM-5?.

The closing date for submissions is now Friday, July 15.

There are just three more days left in which to submit letters of concern in response to the potentially damaging proposals being put forward by the Work Group for Somatic Symptom Disorders the DSM-5 committee charged with the revision of existing DSM-IV Somatoform Disorders categories.

For examples of letters of concern, copies of this years submissions, including the Coalition4ME/CFSs resource materials and template letter, collated here: http://wp.me/PKrrB-19a.

These include letters from international patient organizations, professional stakeholders, patients, patient advocates and professional bodies.

If you have already submitted but have other points to make, please submit a second response.

If you know an informed professional please alert them today to the implications for patients with ME, CFS, IBS, FM, CI, CS, Gulf War illness and other illnesses that are bundled under the Functional Somatic Syndromes and Medically Unexplained umbrellas and ask if they can get a response in.

If the Work Groups current proposals are approved, patients with these illnesses will be sitting ducks for an additional mental health diagnosis of a Somatic Symptom Disorder bolted on to a general medical conditon, or for misdiagnosis with CSSD or SSSD.

If you havent yet registered your concerns, please get a letter in before the feedback period closes on July 15!

Note: Four members of the DSM-5 "Somatic Symptom Disorders" Work Group are contributors to this new book, published in July: Arthur Barsky, Francis Creed, Sing Lee and Michael Sharpe.

The book appears to have developed out of the White Paper by the "MUS" study group of the European Association for Consultation-Liaison Psychiatry and Psychosomatics 1], on which I have previously reported and meetings held in Manchester in May 2009 [2] and Munich in September 2009 [3]:

Medically unexplained symptoms and somatisation are the fifth most common
reason for visits to doctors in the USA, and form one of the most expensive
diagnostic categories in Europe. The range of disorders involved includes
irritable bowel syndrome, chronic widespread pain and chronic fatigue
syndrome. This book reviews the current literature, clarifies and
disseminates clear information about the size and scope of the problem, and
discusses current and future national and international guidelines. It also
identifies barriers to progress and makes evidence-based recommendations
for the management of medically unexplained symptoms and somatisation.
Written and edited by leading experts in the field, this authoritative text
defines international best practice and is an important resource for
psychiatrists, clinical psychologists, primary care doctors and those
responsible for establishing health policy.

About the Author

Francis Creed is Professor of Psychological Medicine, School of
Community-Based Medicine, University of Manchester, Manchester, UK.

"They [unexplained bodily symptoms] form one of the most expensive categories of health care expenditure in Europe. This book makes the case for shifting some of this expenditure away from numerous investigations for organic disease and towards effective treatment of bodily distress." (Preface vi)

"Since the traditional labels 'medically unexplained symptoms' or 'somatisation' are so unhelpful, we propose the term 'bodily distress' as a more useful term for these disorders..." (Preface vi)

"ICD-10 included neurasthenia (chronic fatigue), as one of the somatoform disorders. This is considered here as chronic fatigue syndrome under the heading of functional somatic syndromes." (Page 8)

Well, since Irritable Bowel Syndrome has been PROVEN to exist and have a treatable cause, they are *QUACKS*: fakes, snake oil salesmen, and should be taken to court for it.

Product Description

Medically unexplained symptoms and somatisation are the fifth most common
reason for visits to doctors in the USA, and form one of the most expensive
diagnostic categories in Europe. The range of disorders involved includesirritable bowel syndrome, chronic widespread pain and chronic fatigue
syndrome. This book reviews the current literature, clarifies and
disseminates clear information about the size and scope of the problem, and
discusses current and future national and international guidelines. It also
identifies barriers to progress and makes evidence-based recommendations
for the management of medically unexplained symptoms and somatisation.
Written and edited by leading experts in the field, this authoritative text
defines international best practice and is an important resource for
psychiatrists, clinical psychologists, primary care doctors and those
responsible for establishing health policy.

Doctors who have been telling IBS (irritable bowel syndrome) patients that it's all in their mind will have to rethink that approach after scientists finally discovered the problem really does exist. Researchers at Munich's Technische University have located the cause of IBS and it is in the gut, not the mind. Specifically, it is the result of tiny inflammations in the mucosa of the gut, which upset the sensitive balance of the bowel.

Professor Michael Schemann's research team at the TUM Department for Human Biology demonstrated that micro-inflammations of the mucosa cause sensitization of the enteric nervous system, which in turn cause irritable bowel syndrome. The researchers used ultrafast optical measuring methods to demonstrate that mediators from mast cells and enterochromaffin cells directly activate the nerve cells in the bowel.

The hypersensitivity of the enteric nervous system upsets communication between the gut's mucosa and its nervous system. Project leader Professor Schemann explained: "The irritated mucosa releases increased amounts of neuroactive substances such as serotonin, histamine and protease. This cocktail produced by the body could be the real cause of the unpleasant IBS complaints."

The scientists are the first to identify IBS's cause; up to now, many doctors have dismissed their IBS patients as merely being hypochondriacs. Irritable bowel syndrome makes life miserable for those affected - an estimated ten percent or more of the population.

...... "Some have been misdiagnosed as having a psychiatric illness for 20 years or more and been treated with antidepressants, mood-stabilising drugs, mental hospital in-patient treatment and electro-convulsive therapy.

...... "Some have been misdiagnosed as having a psychiatric illness for 20 years or more and been treated with antidepressants, mood-stabilising drugs, mental hospital in-patient treatment and electro-convulsive therapy.

Note: Four members of the DSM-5 "Somatic Symptom Disorders" Work Group are contributors to this new book, published in July: Arthur Barsky, Francis Creed, Sing Lee and Michael Sharpe.

The book appears to have developed out of the White Paper by the "MUS" study group of the European Association for Consultation-Liaison Psychiatry and Psychosomatics 1], on which I have previously reported and meetings held in Manchester in May 2009 [2] and Munich in September 2009 [3]:

Medically unexplained symptoms and somatisation are the fifth most common
reason for visits to doctors in the USA, and form one of the most expensive
diagnostic categories in Europe. The range of disorders involved includes
irritable bowel syndrome, chronic widespread pain and chronic fatigue
syndrome. This book reviews the current literature, clarifies and
disseminates clear information about the size and scope of the problem, and
discusses current and future national and international guidelines. It also
identifies barriers to progress and makes evidence-based recommendations
for the management of medically unexplained symptoms and somatisation.
Written and edited by leading experts in the field, this authoritative text
defines international best practice and is an important resource for
psychiatrists, clinical psychologists, primary care doctors and those
responsible for establishing health policy.

Click to expand...

Thanks for alerting us of this new ridiculous book. We already knew what they have been trying to do with their 'bodily distress' and 'somatic symptoms disorders', but this really lays it bare!

Good quotes you pointed out. I found this one interesting:

Contact with doctors can be supportive and reassuring or may actually exacerbate the patient's difficulties. This may occur when the doctor... orders investigations for possible organic disease which carry the risk of heightening the patient's health anxiety, especially when the result is normal. (p.27 last line)

Click to expand...

Glad Drs. Creed and Fink (you can't make these names up!) are looking out for the patients by blocking "investigations for possible organic disease" both at the clinical and research levels!

"I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone"

I say that their licenses should be taken away for all the abuse they have perpetrated on us.
Because of them, important studies and treatments have been withdrawn for us.
In addition, all the stressful abuse has been having a direct effect ofnthe deterioration of our illness.

The 2nd period for submitting comments and suggestions to the web site regarding the proposed diagnostic criteria revisions, and the newly proposed organizational structure for DSM-5 took place from May 4th-July 15th. We are appreciative of your ongoing interest in contributing to this process. During our first comment period, we received over 8600 comments from you, our viewers. We encourage you to spend time on this site to investigate the myriad ways your comments helped shape some of the recent updates to the proposed diagnostic criteria. During the second comment period, we received over 2000 comments and our work groups are actively reviewing your input. Thank you for taking the time to provide your insights, experiences, and expertise toward these important issues.​

As I've said in one of the other DSM-5 threads, the fact that the number of responses was well down on last year's initial review exercise was likely a major factor in the APA's decision to extend the comment period by an additional four weeks.

What happens now?

Shortly after the closure of last year's stakeholder review, in April 2010, the APA issued a news release. If a news release is issued in response to the closure of this second comment period, I will post a copy in this thread, which is the original DSM-5 thread.

I shall continue to monitor the DSM-5 Development site for any changes to the Timeline and any revisions to the current proposals for the "Somatic Symptom Disorders" categories and checking for edits to the two key documents:

The various sections of DSM may be subject to revision between the two phases of the field trials, which take place this summer and fall. So there may be interim revisions to the "Somatic Symptom Disorders" proposals before the third stakeholder review is announced and a third draft posted, early next year.

These radical proposals for the reorganization of the "Somatoform Disorders" categories are at odds with the corresponding section of Chapter 5 of the forthcoming ICD-10-CM, which remain broadly similar to the categories and codings in the international version of ICD-10 (note that in ICD-10, Neurasthenia is coded at F48.0, but coded at F48.8 in ICD-10-CM). The partial code freeze for ICD-10-CM codings will be implemented on October 1, 2011.

For comparison with the ICD-10 Chapter IV codes for "Somatorm Disorders", the online Tabular List for 2007 is here. (There is supposed to be an ICD-10 online Tabular List for 2010 which incorporates all the yearly updates to ICD-10 since 2007, published on the WHO site, this year.)

Note that new codes have been assigned to ICD-11 categories throughout all chapters of ICD-11. It's not known yet what eventual codes will be assigned for categories in the various chapters. For example, Chronic fatigue syndrome is currently proposed to be coded in Chapter 6 at 06L00, see

Dear all, if you can, please consider signing this petition. It is so important. http://bit.ly/1T2Aus9
MUPS or MUS is becoming the next big thing with respect to ME or CFS. It will affect all of us. Eventhough there is no evidence base for the biopsychosocial model, nor the treatments MUPS "experts" actively promote, CBT!

Yesterday we found out that 2 members of the Dutch Health Council committee, with task to write advisory report on ME to parliament (in total almost HALF of the committee consists of MUPS / CBT experts) not only wrote articles with White and/or Wessely, we knew that, but they are in EURASMUS
So, Judith Rosmalen and Hans Knoop (2 members of the Health council) are direct colleagues with White + Per Fink (yes, the one from Karina!) http://eurasmus.net/ and Creed

In the Netherlands there is a 1.5 million Euro project funded by health insurers to get ME (MUPS professionals, see ME and CFS as MUPS) patients referred to mental health clinics for CBT. these 2 members of the committee are involved in this project also.

Please if you can help, help and sign the petition. If you can ask others to sign and share this, please do. Dutch patients can really use all the help we can get. The biopsychosocial model does not apply to ME, CBT is no cure ! http://bit.ly/1T2Aus9